In a lower post, Wittsea made a great point.

She said that since her illness and her husband's cancer, 95% of family bailed, and 75% of friends bailed, "because they thought that after the illness we'd bounce right back immediately."

And besides the fact that I always find it unbelievable that family dumps us more than friends - and it's true according to my counselor - she's got a point that people don't accept or expect long illnesses anymore. I mean, they see t.v., and the pharmacy commercials and medical advertising magazines, women's magazines, and no one talks about having a long-term illness like ours. Even MS and rheumatoid arthritis patients are pictured out biking or goofing around at a picnic or running along the beach in the advertisements.

I think our society either expects you to get sick and die, or, maybe need a little nursing care if you're 80, (and then you die), but they just aren't educated about a long-term, totally debilitating and sometimes incureable illness as some of us have here. (I want to note some here do work, ride bikes, etc., but I'm addressing anyone like me, bedridden or seriously disabled but definitely not dying from it.)

I do get side-track illnesses such as my kidney, and now my liver is quite large and fatty and we've got to address it, but nothing that screams imminent death - just problems from lack of ambulation.

I am curious, how many others have FAMILY who bailed on them, and what did you do?

I had fiance simply take over the phone. I can't talk right now anyways - my jaw and ear hurt a lot afterwards - so I just have him tell them whatever the truth is for that day. It has taken a lot of burden off of me then to have to explain "why aren't you better when you were in bed all day yesterday? Have you taken vitamins? Maybe you should see a chiropractor." (If I am hearing that, I just stay quiet. I don't have to say anything. Just dead air.)

All of the advice, when I can't keep up with my med appts. and psych telephone appts. already...I'm work out by my med schedule!

So how did you handle it?

I brought this over from your first thread to keep this thread going. I agree that losing family and friends is an unfortunate reality that we experience once we've had a serious illness. That or they just don't understand or won't understand the fact that we are not bouncing back to our old selves right away, if ever. Hubby and I are on our fourth year of chronic pain and illness and one family member asks weekly " so when are you gonna get over this??"

It never fails that my Tos is the worst around the holidays and I miss out on so many get togethers and events. No one understands how I can "look so great, look so healthy" in the summer and then barely be able to move when it is damp and cold.

And then if we do manage to make it to something they don't understand why I still can't pass the food, or reach for a gift to pass around to show everyone, or even opening presents... Hubby has to do that for me. When they see him fill my plate, cut my food etc. etc. they act like I'm just trying to get attention.

And poor hubby, one day he's improving and the next he's having a reaction to his meds. in his pump and is swelling in the extremeties and unable to think clearly.

I think it's true that people don't know how to react, even our middle son sometimes avoids us, and he wants to be a doctor..? That one I don't understand. Is it fear of losing his Dad?? (Hubby's son)

It is painful Tam and everyone. It's heartbreaking.

We've tried sending the "spoons" story to everyone; no response, we sent some of the threads and articles Tam mentioned from the old BT and they also didn't seem to make the point.

We have even taken the direct approach and said we hurt, we miss you, come see us, and for a while things are better and then it's back to the same old routine.

One of my oldest and dearest friends let it slip (before my surgery a year ago) that she went to the mall to shop and almost called to see if I wanted to go but didn't bother because I am always sick. I asked her to call me in the future just in case and let me at least have the option of telling her if I'm well enough to go because I am lonely and isolated at home all the time. That's the last I heard from her.

So I don't have any suggestions to offer, just looking for someone elses.

Anyone??

G ~

I think its a tough line to walk between people bugging you by either constantly asking how you are and if you're better and having people never ask. I struggle with getting frustrated when people ask all the time- getting frustrated doesn't help anything anyways. I also don't want to seem like i'm complaining if I always answer - no, still hurting - so i usually give the half-hearted, yeah, i'm ok for an answer. Thankfully, I don't think we've lost any family/friends because of this, but we're only 6mo -9mo into it. My moms good friend has chronic pain/neck muscle problems, so my mom knows how hard chronic pain can be and how all the meds/lack of sleep can weird us out sometimes. I'm lucky in that respect. That being said, you're right Grom - people do struggle with the "well, you look healthy, how come you say your sick?" all the time i think. The people i work with have "joked" about that, but i think my boss is starting to understand how draining it is NOT to know when (or if) you're going to feel better, when you'll be able to live your old life. enough rambling from me.
Time to be constructive: I think the best way to handle the people that have left/stopped being in touch is (if you're up to it) - call them and ask how they are, and tell them how you miss seeing them, and that even if you are always unable to go out, you appreciate the invite. If they continue to duck your phone calls or just don't call back, let it go- you tried, and thats all you can do. (I know thats easier said than done). Lets all face it- we may not feel like going out, may feel like crap, but getting out and about might help take your mind off the pain, and at the very least, give you a change of scenery.
Oh- i sent the "spoons" to a couple of people, and got back (no kidding ) - "Oh, you have lupus??" I just sat there dumbfounded that they didn't get the point. Oh well.

Most of my family are pretty understanding , but I'm not in high or constant pain either and can do most activities up to a point.

But if I get asked I just say it's a chronic/long term condition, so they will understand that it's not going to go away totally.

Some do still ask about my "hand injury" that is a bit humorous- but they probably only remember the bad times when i couldn't even pick up anything.

I usually say it went into my neck and shoulders now , my hands are pretty much OK for using now- just not overusing.

When anyone asks me how I am doing I always say "no better, no worse".

I refuse to use the words "fine" or "OK" because too many people assume that "fine" and "OK" mean healthy..... I don't want to give the impression that I am healthy and cured, but I also do not want to sound like I am wallowing in agony and telling my "sob story" anytime someone asks how I am doing.

So, my habit is to simply say - no better, no worse - and then change the subject by asking how the other person is or asking what they have been up to lately. If the person then wants to know more about how I am really doing they can ask more questions and I am happy to answer...

... but most people who say "how are you" are simply doing it as a habit or to be polite - they don't really want to know how I am doing, so I save them and I save myself by giving a short and sweet and honest answer.

No better, no worse, thank you for asking.

Can you imagine being an alien attempting to decipher our customs and lifestyles through primetime television advertisements/shows?

However, I would let Dr. House and his team dx/rx me anytime...all would be fixed in an hour or less. :icon_wink:

Not only do some family members and friends pull away from "invisible" CPers...but some doctors also follow that course. My latest pcp was livid that I refused to take Enbrel for RA. He couldn't believe I would refuse something that would "cure" my RA. At $1300 an injection and a possible cancer connection...I wanted to wait/see. Not the answer he wanted.

My circle of friends is small but supportive. When someone inquires about my health/chronic pain...I answer, "I am doing the best I can."

I am thankful that none of my family/friends are suffering with CP conditions but must admit that I envy their simple medical complaints:heartburn from excessive fast food consumption, minor aches from lifting the wrong way, eye strain from too much computer time or forgetting to remove contacts, headaches from having that third glass of red wine, etc.

The average person can't imagine being in level 6 plus pain 24/7 or the side effects that come with taking the meds that can "cure" us.

I wish none of our "forum family" was in such chronic pain BUt I am thankful for this support group who knows what I go through on a daily basis

AND

allows me to prattle on about it!

My forum friends are the best!

Gentle ehugs, Carly